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Will Congress Help Patients With ALS Waiting For Access To Investigational Drugs?

Mayuri Saxena first knew something was wrong when she started tripping at work and struggling to get out of her seat during her commute on the New York subway. In just three months, the 32-year-old got into a wheelchair, but she finally learned what was wrong: she had ALS.

Faced with a life expectancy of two to five years due to amyotrophic lateral sclerosis, a degenerative neuromuscular disease that widely affects voluntary muscles, including the vocal cords, Saxena and her family turned to experimental drug trials as their only chance to treat the disease. One by one, she was rejected either because of her wheelchair use or because she was too far advanced in her illness.

“It’s honestly that our hope started to fade,” said Mayak Saxena, Mayuri’s brother. “To know that a treatment like this exists on this planet and on the other hand to see my suffer, die and suffer. It is such an injustice that needs to be addressed on so many fronts.

#Congress #Patients #ALS #Waiting #Access #Investigational #Drugs

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